Community rallying to support infant Neve Beisel

Neve Beisel has spent most of her four months alive in the hospital. Her problems began in the womb, a few months before she was born, when her abdomen stopped growing.

“Her abdomen stopped growing and they couldn’t figure out why,” her mother Whitney Kendrick told me on the phone from BC Children’s Hospital in Vancouver. “Normally it’s either genetic or there’s something wrong with my placenta.”

Doctors conducted tests but they couldn’t find anything conclusive. At 21-weeks pregnant, Kendrick moved to Vancouver with her toddler son Ford to be closer to a tertiary care centre in case she went into labour early. Cory Beisel, the father, stayed in Revelstoke.

After two months there, they were able to move back to Revelstoke, but Kendrick still had to go for ultrasounds every two weeks as a precaution. When Neve was born in the early morning hours of March 27 – about 10 days earlier than expected – she immediately had trouble breathing and had to be hooked up to a machine to be stabilized.

That was the beginning of Neve’s issues that have led her to spend so many days in hospital, hooked up to feeding tubes and breathing apparatus while doctors try to figure out what is causing all these problems.

Pictures Kendrick have posted to Facebook are shocking, showing little Neve hooked up to a maze of tubes and wires

To help the family financially, some friends have set up a page where donations are being accepted, and a benefit concert is being on held on Sunday, July 28. Updates are being posted on the Facebook page Support for Neve Beisel.

After Neve was born, there were fears her heart was on the wrong side of the body, and too large. She was airlifted to BC Children’s Hospital in Vancouver, where she was placed in the neonatal intensive care unit. She was given oxygen and a feeding tube was attached.

“She breathes all the time like she’s running,” said Kendrick, adding that because of that, “She can’t eat, she can’t breast feed, she can’t bottle feed.”

Four days after returning home to Revelstoke, Neve developed an infection where her feeding tube entered her stomach, so they had to go to Kamloops for treatment for three days. That was followed by more time at home, and then another trip to BC Children’s while their son Ford was being checked out.

That’s another part of the story. Ford was born with a genetic issues that stopped the development of one eye, his pallet, one of his thumbs and caused a unusual development of his spine. He will be at BC Children’s to be fitted for a new eye later this month. Despite his issues, Kendrick said he is developing just as a 2.5-year-old should.

Meanwhile, Neve’s problems continued. In June, on a trip to Grand Cache, Alta., where Cory was going to work as a raft guide, she started having seizures. She was flown to Stollery Children’s Hospital in Edmonton, where she spent two weeks being stabilized and waiting to be transferred back to British Columbia. “They still don’t know what caused the seizure,” said Kendrick.

Because of her ongoing problems, going home meant an $11,000 flight, which the province of B.C. wouldn’t pay for. Stollery’s paid for the flight and Kendrick is hoping they will be reimbursed through her insurance. This time, they went to Kamloops.

“We hoped we would go home from there,” said Kendrick. “Our pediatrician, because there were too many unanswered questions – why did she have a seizure, why did she require oxygen to breath – she felt more testing needed to be done.

“She was doing pretty well and they thought maybe they would send her directly home with the plan to have follow-up at B.C. Children’s in the future, but then last Saturday she had a couple episodes where her oxygen levels dropped and they thought maybe she was having a seizure again. At that point the doctors decided we needed to go back to B.C. Children’s and have this stuff looked at.”

I spoke to Kendrick while she was in Vancouver with Neve, and Cory and Ford were in Revelstoke, where Cory works as a guide for Apex Rafting. She told me Neve was undergoing more tests. One side of Neve’s body is bigger than the other, but the doctors aren’t sure if one side is too big or the other is too small. Given the problems both Ford and Neve have experienced, a geneticist will be conducting tests on all of their DNAs to determine the reason for their problems.

“They think either Cory or I have something hidden in our genetic makeup that is creating these problems or its a combination of our genes coming together that is a problem,” said Kendrick. “Both kids, they think their problems are related to gene expression and growth genes being turned on and off at the right time in development.”

For both parents, the ordeal has been very tough. Kendrick said she’s taking things day-by-day. She was planning on returning to Revelstoke with Neve this week; Neve will remain on oxygen. “The main thing I want is a plan so when we get back to Revelstoke we have some information,” she said. “So if she has another seizure we have medication that can help her recover from that seizure, that she has proper breathing and she’s not having these saturation dips.”

The July 28 fundraiser is being organized by Rubyanne Meda and Doris Folkens, two of Kendrick’s co-workers at Queen Victoria Hospital. It will feature performances by Salmon Arm roots band Seal, Skull, Hammer; and Folkens’ group The Lonely Souls. There will also be a desert auction. Donations can also be made through the Facebook page Support For Neve Beisel.